First-Ever ILD Day is September 15

ILD Day, September 15, 2021, has been established to raise awareness of Interstitial Lung Disease (ILD) and to speed diagnosis and ensure proper care and treatment for individuals at-risk and for those experiencing symptoms. There are more than 200 types of ILD, an umbrella term used for a large group of diseases characterized by inflammation and/or scarring in the lungs. This effort is a collaboration among nine organizations, including the Pulmonary Fibrosis Foundation and the Scleroderma Foundation, with funding from Boehringer Ingelheim.

READ

September is Rheumatic Disease Awareness Month

September is Rheumatic Disease Awareness Month, which was created to raise awareness of over 100 rheumatic diseases that affect millions of people each day. 

The Rheumatology Research Foundation will share educational information and spotlight RheumChampions throughout the month on Facebook, Twitter, and Instagram. 

Rheum4You: Reproductive Health & Rheumatic Disease WEBINAR: Sept. 14, 2021; 7 p.m. Eastern Time

As part of Rheumatic Disease Awareness Month, the American College of Rheumatology and its Simple Tasks campaign will host an interactive, patient-focused webinar on reproductive health and rheumatic disease. 

Attendees can expect discussion and resources from a panel of leading experts in reproductive health and parenting.

REGISTER

SYNC Meet-Up

ZOOM: Friday, Sept. 10 at 7:00 p.m. Eastern Time

SYNC (Scleroderma Young Adults Needing Connection) invites you to join their September 10 Zoom meeting. This meeting will be a general discussion among young adults between the ages of 18 and 42, who are looking to connect with other individuals affected by scleroderma. For questions, please email Amy Gietzen, agietzen@scleroderma.org or Natalie Puccio at nataliepuccio18@gmail.com.

REGISTER

BIPOC Virtual Support Group

ZOOM: Sept. 12, 2021; 4 - 5:30 p.m. Eastern Time TOPIC: Exercising at Home

The September BIPOC virtual support group meeting features Delaney Duchek, BASc, an MSc student and research assistant in the Health & Wellness Lab, Faculty of Kinesiology at the University of Calgary in Canada. Delaney began working with people living with scleroderma through SPIN (Scleroderma Patient-centered Intervention Network), and more specifically, through the SPIN-CHAT Program during COVID-19. She taught "Exercising at Home" sessions and is excited to adapt these sessions to bring exercising at home to the Scleroderma Foundation BIPOC Support Group.

REGISTER

Let the World Know

Each September, join with those who have been impacted by pulmonary fibrosis worldwide to unite for Pulmonary Fibrosis Awareness Month. This initiative relies heavily on social media participation to spread the word about pulmonary fibrosis all over the world. One of the first steps you can take is to follow and interact with the Pulmonary Fibrosis Foundation on social media, using their handle, @pfforg, and get social with hashtags #PFMonth and #BlueUp4PF.

Facebook | Twitter | Instagram | YouTube

9th PeDRA Annual Conference

VIRTUAL: October 14-15, 2021

The Pediatric Dermatology Research Alliance (PeDRA) will hold its ninth annual conference virtually October 14-15, 2021. Free registration is available to all patient stakeholders until September 20, after which there will be a $15 fee. This applies to patients and parents as well as organizational staff and leadership. To register for free, follow this link and use the “Community Early Registration” category.

LEARN MORE

Kids Get Scleroderma, Too! Save the Date

VIRTUAL: October 23, 2021

The 2021 Kids Get Scleroderma, Too! (KGS2) conference is a one-day event on October 23, 2021. The KGS2 conference focuses on education related to both the localized and systemic forms of scleroderma. Parents and guardians will have specialized education to help their journey in raising a child with scleroderma.

To receive email updates when registration, scholarship, and programming information are available, please enter your email address here.

Designated Scleroderma Research & Treatment Centers

To ensure that individuals who have scleroderma, or who are seeking a diagnosis, are provided with knowledgeable resources about diagnosis, care, and research, the Scleroderma Foundation's Medical & Scientific Advisory Board evaluates medical institutions against specific criteria. Institutions that meet the criteria become "Designated Scleroderma Research & Treatment Centers" and are listed on the Foundation's website.

Criteria for Designated Research & Treatment Centers:

• Demonstrate expertise in the care of patients with scleroderma
• Conduct scleroderma research (clinical and or observational and/or laboratory-based)
• Conduct educational activities about scleroderma, and provide information about the advances in the care and treatment of patients with scleroderma to health care professionals and the public

DESIGNATED CENTERS
 

Platinum Corporate Sponsor

Gold Corporate Sponsor

Silver Corporate Sponsor